Great News

Broc and I took a trip to Ann Arbor on Monday for his 6th month follow up for his bypass revision surgery he had in January. It was an early morning and the weather was not so nice to travel there and back but we made it in one piece.

Broc loves the hallway with all the hand painted animals and sculptures. As usual he found the frog covered in other little animals.

Once we got down the hall way we made out way to CVC after we had his scanograms done.

We got checked in pretty quickly. Guess we timed it just right. First we had ABI's and TBI's. These are scans to check the blood pressures in his arms,legs and toes to make sure they are all fairly equal.

We then moved on to the ultra sound room. Where they monitored the blood flow through the graft and the new revision they made in January.We ended up waiting quite a while to see Dr Eliason so Broc made himself comfy. He wasn't feeling the greatest but you can never tell by his bouncy personality and smile.

Dr Eliason came in with the great news. His legs are only ......... DRUMROLL!!!!!!!!!!
0.3mm different!!!!!!!

That is amazing!!! It is even smaller than when he had his surgery. we had only gotten to 0.8mm.
Below 0.5mm he is considered having a normal leg length. The fact that is legs corrected so fast means that the revision surgery was critically important and could have been disastrous if we had not caught the discrepancy when we did.
We will still go back in 6 months to monitor the blood flow and have scanograms, ABI's ,TBI's and ultra sounds done again. Broc continues to prove that he can overcome all odds. We are so proud of you Buddy.

Broc continues to have some leg pain so he will be evaluated for scoliosis due to the big discrepancy he had in the very beginning before surgery. If that is all normal then it is just an alignment issue and that will correct over time but we will have to treat him for the pain that it causes him.

Broc had his IV therapy treatment yesterday as well as blood work. His lab work came back low again and he has a fever so we will be watching him very carefully. His blood sugar also spiked last night so we will continue to monitor that too.

Broc will be taking a break from IV therapy for a while for his hematologist to draw the labs she needs. He has to be off his treatment for at least 6 weeks. We are a little scared as it has kept him fairly healthy so stopping it is not ideal but in order to get these labs done its something that has to be done.

We are hoping that his labs will look good next week as we have our Regional Convention next week. It is something that we all look forward to very much each year. After a few of them Broc has become very ill and ended up in the hospital so we will be very careful with keeping a mask on him and keeping him as close to us as possible.

We still have Brocs fundraiser going. Many people have bought t-shirts and we thank you for your loving support. The money will also go toward any medical expenses that we have for him such as gas for travelling to Drs and hospitals and any other supplies that he may need.

This is what the front and back of the t-shirt looks like.

Here is the link if you would like to buy one.
www.booster.com/brocsbuddies.

We also got a phone call from his GI to say that all the biopsies that were taken during his endoscopy were negative. While that is good news it still doesn't give us an answer as to why he is having pseudo obstructions. We are going to start slowly introducing foods into Brocs diet. This will be a very slow process and very food specific. There are many elements that we have to consider when doing this and he has to be monitored closely. We are still thinking that the pseudo obstructions are somehow related to viral infections or when his body is trying so hard to fight off something that it doesn't have the energy to do what it naturally needs to do. Our hopes are that Broc will be able to eventually eat some foods that he can tolerate and he will be supplemented with formula to make up the rest of his calories.

We are trying to give Broc the best quality of life possible. We welcome any visitors if you are not ill or been around anyone that is ill. We ask that you please call or text before coming over to find out if Broc is able to have visitors due to being Neutropenic.

Thank you for your love,support and prayers.

A great dr has joined our team.

The new Dr we saw today was wonderful loving and kind.She spent over 2 hours explaining all Brocs labs to us from the last 5 years that they have at Riley. 
She is running a few tests to see if she can narrow the cause down. There are so many causes for neutropenia. Her main concern is the neutrophil count as it is the biggest white cell component. She is happy with his other labs for now. 
She wants to test his immune system to see if his immune is attacking his neutrophils but he has to be off IV therapy for 6 weeks. So we will stop that after his one next week so we can draw that then a bone marrow biopsy will be done in October when he is sedated for his gj tube change. 
If he has an ANC of less than 1000 he is neutropenic so we have to stay away from public places, confined spaces etc.  If he has a fever of 101 go to ER and if ANC is 500 or less then direct admit with IV abx for 48 hours or until blood cultures come back negative. 
She said these numbers are not virus related at all and was horrified how Broc described a bmb to her. She was stunned that Dr Nelson would scare Broc like that. 
He is much calmer about it now knowing he will be asleep and have pain meds after. 
If we have a plan to go anywhere in big crowds we need to know his numbers before hand. 
Whenever he has a fever or cough or is ill or not himself we are to have labs done to check his counts. 
She said he is actually worse than someone on chemo cause his ANC stays below 1000 for a longer time. Chemo patients have chemo it drops then comes back up but his hardly comes back up. 
It was a great app and we are very happy to have her on our team for Broc. 
Thank you for all your love, prayers and support.